The definition of trauma is a deeply distressing or disturbing experience and the sentence used on Google is “a personal trauma like the death of a child”.
I am going to write this blog. This is the one that needs to be written, shared, read aloud and remembered.
The above pictures are just some of the ones that show what I went through and still hold onto with a sick son. From the beginning to now it’s awful. It’s a plague of the mind that no mother should ever have to endure. Most of these pictures my husband took or I snapped a selfie to remember my pain. Like I need a picture for that but it’s documented that way. I am writing this on the day after a nocturnal panic attack. Yes, that’s a real thing. It’s a panic attack that happens in your sleep and wakes you with a dreaded impending feeling of doom. I have had them before so I knew I wasn’t really dying even though that’s what it feels like. I have to put my brain on repeat telling myself, “you’re ok, you’re fine” until I believe it. It takes awhile and then my body responds and the tingling in my hands and feet that are all sweaty subsides and my head that feels like it may explode from the pressure calms and the physical shaking stops. My body is weak and tired but I can’t return to sleep, not until my brain slows and feel totally at ease again. It’s like a relaxed feeling once it’s finally over. It’s very much like a normal panic attack during the day yet it takes you by surprise because you’re asleep. I suffer from these lovely attacks now because I have PTSD. I have PTSD from my son getting sick. I have PTSD from my son having inoperable brain cancer, hydrocephalus and adrenal insufficiency. Three diseases that are with us for good. That I worry about ALL the time. Even with his stable diagnosis and more time in between MRI’s and favorable health, I am sitting here at my computer bouncing my leg at the memories that all of this pictures created. The hell he endured and I witnessed meets the criteria of that definition above. I say me because this blog isn’t about my family, it’s about me. What I have dealt with and gone through and still battle. It’s the truth of being a mom to a sick child. The caregiver that quit her job and let go of herself while she tended to the everyday needs of her child. The caregiver that has held him up when he was ready to pass out after chemo but had to vomit even with the round the clock Zofran that I set my phone alarm for and his body was so weak that he needed me to wrap my arms around him while he threw up and tried not to poop his pants at the same time because the force of the vomit was so intense. I am the mother and caregiver that changed his fentynal patch every 72 hours and gave him oral morphine for his break through agonizing pain that he washed down with his juice in a sippy cup because he was only 4 when he was diagnosed and put on those heavy narcotics. Yes, my son was on heavy narcotics to keep the pain tolerable. TOLERABLE. I lived with a son in chronic pain that he had to live with and it was devastating to watch. How do you handle that when he would pace and drag his leg and scream in pain? He would beg me to make it stop while crying and screaming “I love you mommy, I love you” because he didn’t know what else to say. That went on for a very long time. Once it was “managed” by a palliative care team it was better to where he could sit on his heating pad that I could click on with my toe, turn on the TV with my hand and pull 3mls of morphine in the dark when he would wake with pain in the night. That went on for over 2 years. I am thrilled, elated even, that he is now narcotic free but my mind isn’t. Those memories live inside me like ghosts that haunt me and I never ever know when they will decide to scare me.
The 15 months of weekly treatment that was like a battle in a war that was being fought to save his life. One I personally fought for before he was properly diagnosed. He almost died. He almost died for Christ’s sake. I know he didn’t. Clearly he didn’t but, I still see him passed out in the kitchen bathroom when he was drowning in his own fluid as he hadn’t been diagnosed with hydrocephalus yet and he was experiencing severe headaches, dizziness and vomiting. He could barely walk with out assistance and his pain and agony was so intense. So bad that when he got up to pee, he fainted. I held him in my arms as I had walked him to the bathroom and he looked at me so scared all of a sudden and he was out. Just like that. I caught him and he came to terrified and I carried him to the couch and called his doctor and we took him to the ER immediately. That lead us to the doc the next day where he was vomiting in the waiting room and crying in pain. His head hurt so bad. He was so puffy from the steroids and we were terrified. The doc told us to get him to a children’s hospital as fast as we could or the pain would consume him. And it was. Adler was drowning as we sat there in his own fluid. We took him to Lurie the very next morning where he ended up having emergency shunt surgery and they found his tumors. I remember it all. ALL of it. The lights, the sounds, the smells the feelings, ALL of it. That was the first visit. That wasn’t the 15 day stay that reviled the cancer diagnosis and treatment plan that capsized our lives forever. The time when he had his biopsy that was by far the worst thing I had ever seen. They woke it up. They went into his lower lumbar spine that is thick with the same material as his tumors in his cervical spine and the several that reside in his brain and they woke it up. They had to remove a small piece of his spine after they cut the dura that goes around the spine and contains the spinal fluid that flows to the brain and is pumped much like the heart pumps blood and then take a tiny piece, a sliver much like a Pringle, is what they told us and then put the bone back. Then because he has hydrocephalus and they cut the dura, he would have to lay on his back for 48 hours to let it heal as he could not risk losing any of that fluid due to the cut. He actually squealed like a pig from the pain when he began to wake from anesthesia. I have never heard anything like that. And I never want to again. He was in so much pain. So much pain. The nurses gave him as much morphine via his IV along with other drugs as often as they could round the clock. That night was the worst night ever. EVER. I held his hand over the bed rail and cried. Aaron passed out because he couldn’t handle it and my mom stayed as long as she could but had to go back to the apartment and get some sleep. I stayed up with him all night. My hand over that rail holding his and getting up to try and comfort him as often as I could. Those two nurses one male, Charlie, and one female who I can’t remember her name were amazing. At one point when he was calm and asleep I snuck into the hallway and tried to let go. I tried to cry but it wouldn’t come out. I leaned against the wall looking out the end of the hall window at the city lights and begged for the tears to come. They did, but only when Charlie came over and took the time to hug me. And after he did and had to get back to his job, I slid down the wall and sat on the floor of that hallway. I sat with my head on my arms that were folded over my knees hearing the beeps and clicks of the IV that was attached to Adler because I left the door open just in case and I sat there crying. My hair and clothes soaked in the smell of the hospital. My brain so filled with fear and anger. My body so weak and tired but tragically wired from anxiety of what the results would say.
And that is just one time out of uncountable times that I had to be there for Adler in a hospital setting. The countless ER trips for fevers and headaches. For actual chemo for 15 months week after week. That routine became normal and safe. We made friends with the nurses and found solace in that exterior friendship. Those days drug on and on but the days after, the hangover days, were the worst and I was on duty for those. Standing at full attention with the puke bucket and ice packs and popsicles ready.
And he had MRI’s every 3 months. That’s 90 days. 90 days is a trial period at a job. That’s when your insurance kicks in. That’s not very much time in between to deal with that anxiety that comes with a scan. There is a term among us cancer folks called “scanxiety”. It’s a real thing too. I never got to come down. It would be calm waters for a few weeks and then boom, the storm would come again. I always compared it to that of a storm because that’s exactly what it feels like inside. The clouds swell and the waters churn at sea inside your mind and as soon as the day comes and Adler was walking into that MRI room away from us as we would stand at that yellow “Do Not Cross” line, it would hit. The tornado and hurricane would come and I couldn’t do a goddamn thing about it. There were other times than just MRI’s that came with the fear of results and the fears of what we already had been told. And how do I just let that go? I can’t. I have moved on and past it but it lingers. It’s still there like a phantasm of the night ready to come to me and take me over when I least expect it.
The other day I had an appointment with my electrophysiologist and I used the restroom before my appointment. I had never used it there before. I went in, did my business and went to wash my hands. As I looked at the sink and turned on the water I realized that the sink was exactly the same as the sink in the ER restrooms. Of course it was, they are both Beacon medical facilities so why wouldn’t it? And literally as I turned the hot and cold on, my hands began to shake a bit, my mouth dried and body began to rev up. The anxiety was coming. My head got foggy and I closed my eyes. I took a few deep breaths trying to detour it but it didn’t work. I pumped the soap and finished washing my hands while every single memory of Adler in the ER flooded my mind. It was like clips from a movie and each one was a preview I had already seen and they played over and over as I closed my eyes and tried to make it stop. I dried my hands and the tears came. I felt trapped. I couldn’t breathe. I wanted to run out of there but I had my appointment. I had to stay. I thought of every single time I had washed my hands in the ER, every time I had held Adler’s hand and walked him to the restroom and helped him wash his hands. And every single time I had gone in there to escape and splash water on my face and try to get my shit together. A sink. A sink made me have and anxiety attack. Really? And that is the truth. It did. I have had smells do it. I have had pictures or songs do it. I have run into things around the house as I am cleaning or organizing do it. I mean, I come across Lurie and Memorial wrist bands constantly and Lurie ER or visitor tags all the time. I used to keep them all in one spot and some hung on the fridge too but they are everywhere around this house. Its ridiculous. And sometimes they bother me and sometimes they don’t. That’s the tough part about anxiety and about PTSD, it’s very unpredictable. I have had two huge panic attacks in public. One where I had to run out of Target right after his shunt surgery. I left my cart full of everything and literally ran out of the store crying. I kept hearing the doctors over and over again in every isle and the sound of the lights buzzing and the people talking became amplified and I couldn’t take it. I ran. Once I got outside and the fresh air hit me I was Ok, but I had to leave. Another was at Whole Foods when Adler was in treatment and he was so thin, not eating even on his appetite stimulant. I went there looking for the fattiest healthy things I could find after a million Google searches and Facebook posts about what do I feed him and I was crying in the isle. I was reading labels and it hit me like a wave. My son was on chemo. My fucking son was on chemotherapy. Oh My God, and I couldn’t breathe and my heart was pounding and I ripped my coat off and I tried to be discrete about it but I guess I wasn’t because a lady who worked there came over to me and asked me if she could help me and I told her everything. I just threw up my story on her and she hugged me and took my cart for me and my hand and we looked through all the dairy items and cheeses and the snacks and I left there with 4 bags of fatty foods for Adler. There have been minor ones out and about too. One at the movie theater where all my senses just took over and I managed to get through it. One at Adler’s school after I dropped him off after a rough morning with pain and was scared to leave him and I cried on my way to the car when he was in kindergarten. I have had many at home that lead to me having the interior painted, getting new carpet, new furniture that was actually truly needed and acquiring things to change the look of what I deemed the “pain prison” to help ease the anxiety that sadly resides here along with so many memories. Many good, but some so bad that it’s hard not walk into a room here and see them in my mind in this house. Hell, I even thought about moving. Even after I changed Adler’s room and playroom around since he had too many sad memories in his own room. I wasn’t sure that was enough.
But I grin and bare it even at the hospital functions and the brain cancer functions and through the Facebook posts and pages I follow because I am in a club I didn’t want to ever join. I am honored that my son is such a beacon for those like him but at the same time I hate that he is. I am happy to know all the amazing people we have met through this but I hate why I met them. I love the hugs I have gotten from other mothers but I don’t like why we hugged. I will never not be there for them though because we are sisters now. Now and forever. I may smile in the pictures but there is sadness in my heart that my son has a plaque that is in celebration of his life at the new Beacon Children’s Memorial Hospital. And every video he dances in makes me so happy because he can dance but it also reminds me of when he couldn’t and there in lies the tight rope of anxiety and depression.
I lived and breathed his life, I still do. I did anything and everything I could to get him through it. He had to live. He had to. No matter my sadness, anger, frustration, discouragement or the anxiety that plagued me and drove me at the same time, I did whatever was needed. And that included neglecting myself and then finding myself. I got clean and sober through all of this and lost weight because I had gained so much. I remember throwing mouthfuls of cold macaroni and cheese into my mouth as fast as I could between episodes of pain with my foot on the trash can just so I could get some sustenance. Or cookies and milk at 10:30 at night when I finally had a moment to sit and not worry too much and I didn’t eat just a couple. And hospital food is just shit so……..and it’s still a battle but I continue to work on myself as I continue to be the best mom/caregiver I can be. And realizing that pain pills and booze were not my friend anymore but rather my toxic enemy was beyond eye opening. It was a revelation that took me down a path of recovery and made me stronger than I ever knew I could be. But along with recovery comes uncovering. And then you have to deal with all that stuff that was buried. Being sedated for so long makes waking up a very beautiful and terrifying feat.
I eventually found a therapist that has been a godsend and I couldn’t do anything with out her now. She’s been there for me for over 2 years and she is my biggest cheerleader. I love her. She has helped me identify and work through some very terrible things that have come to light though this journey and she was the one that said “you have PTSD”. And she described it as that I have fought my own little Vietnam in my home with my son. I am shell-shocked from my son’s illnesses. I am stunned by the traumatic events that have occurred during this horrific time in our lives. I have described it as being shattered and having to walk bare foot across the broken piece of myself and put them back together but they don’t fit the same at all. I am not the same person I was 3 almost 4 years ago when this all began. I am stronger and weaker at the same time. I may be bruised, battered and broken but I am still breathing. I am alive and so is my son. The war may never be over but we won this battle and as I assemble my troops for the impending ones to come I recite many battle cries and poems aloud that have been read bedside to my sick son who once had steps leading to that bed as his physical impairments made that necessary. The reminders live on as I carry on in my daily life with hope and sadness, love and light even in the darkness of my distress. A white flag flown to surrender to my restlessness and disquiet despair. I am who I am. I am an unfortunate unforgiving mess because my son got dealt the cancer card but I am the Admiral and the General of this life and I take no shit and give no fucks because I have earned that right. I have watched my son fight for his life and I have held his hand every step of the way and will not go quietly into the night even with the specters of my subconscious. Daily demons of the past walk with me and even now as I sit and type this I am in my Adler t-shirt because my son is a superhero and lives eternal as one on a cotton blended shirt because he has cancer and I will wear it proudly along with his wristband and the tattoos that are all in honor of him and my journey. I am a cancer mom and it sucks. There it is, in black and white with the gray area being the ribbon for brain cancer and a diagnosis of PTSD for me.